My son is NOT Adam Lanza

     It snowed today which meant all I wanted to do was sit on the couch, sip hot cider and read. While I wasn't able to do much of that during the day I did finally get the chance shortly before putting Sami to bed.I curled up with a warm blanket and my kindle while Sami watched his favorite before bed movie. I decided to waste the last few minutes before he goes to bed on facebook. Scrolling through, I notice that a SPD page I follow had shared an article that stated in bold letters "PLEASE DO NOT SHARE THIS ARTICLE". I saw a little blurb of what it was about and my heart started to beat faster. The one thing I have feared since December, Adam Lanza had sensory processing disorder.

     I opened the article and took a deep breathe as I started to read. Fear began to fill my mind and I began to run far too many thoughts through it at once.

 How many people have read this?

What are they thinking?

My son is not this man but how many think he could be?

What is this going to do to our community of SPD children?

What kind of publicity is this going to give us?

     Let me be clear, I know not every one will read that article and think badly of all SPD children. However I think back to so many times something horrible has happened in our society and immediately it turns to mental illness, race, religion, ect. Society often hates what they cannot understand and up until this moment, sensory processing disorder has been a silent illness.

     There are many in the community of sensory parents that have tried to spread awareness, myself included. We try to tell others and explain this neurological disorder however it has been mostly ignored. Now it will not be ignored. We're not going to be ignored anymore, but this is NOT the way any of us wanted for awareness to be spread.

      My son is my world, my whole world. The little boy I write about on this blog is the best thing that has ever happened to me. He makes me smile even when he's not smiling and even though I have to ask for every hug or kiss I receive, they are the best hugs and kisses in the world even if they last less than a second. My son rarely cuddle, nor does he appreciate being touched much. He is not the most social child on the planet and does revert into himself from time to time. Despite all this, my son brings joy to so many around him.

      Samual is not his disorder, just as any other sensory child or adult is not their disorder. Samual can become anything he wants, he can love anyone he wants and can do anything he wants. My son will be affected by many factors as he grows into a young man that have nothing to do with his disorder. He will be affected by the way his other parents and I raised him, by the way he is treated by peers, by the education he receives, by the events that occur in his life and many other factors. Samual is not his disorder, he is an accumulation of life events, love, friendships and so much more untold ventures along the way.

     Just as my son, is not his disorder, Adam Lanza was not his. I can not even begin to speculate who he was or why he did the horrible things he did, but I can be certain, his disorder did not cause him to act out in such a violent, tragic way in the same way that I am certain that my son is a wonderful joyful person.



   

We Live!

So it has been a hot minute since I have posted. We have had a ridiculously busy past few months and by some miracle everything is finally starting to slow down.

In October, Samual turned two, Jd turned 32 and a vast number of my family flocked to Oklahoma for our commitment ceremony. We were blessed to have my best friend join us and officiate the ceremony which was super exciting as we haven't seen him since Samual was 8 months old. We were also blessed to get to spend my sisters 21st birthday with her while she was here! Samual got to see many family members he hadn't seen in a long time and even though it was a little over stimulating, he did enjoy himself.

Samual at our ceremony

November was mostly a time to get ready for the holidays, clean up from October and Jd with lots of overtime and not much time at home. Ah the joy of working in retail during the holidays. Also in November, Samual's occupational therapist had her baby a whole month early! This did throw Samual off at first but he survived through it better than I thought he would. She and baby are both healthy and she is now back from maternity leave which I think makes Samual pretty happy.

Samual at the zoo. Putting his fingers in his ears is a sign he is over stimulated. 

December brought a multitude of busy and the beginning of the sick season. I got sick with bronchitis early on and Samual started to get terribly sick as well. He started to get a barking cough and it came on very quickly. Justin, N (Justins girlfriend) and I all rushed Samual to the hospital. He was diagnosed with croup and Samual was subjected to breathing treatments and an overnight stay at the hospital. I can honestly say that in this entire journey with Samual, that was the most helpless and defeated I have ever felt. About 2 weeks after being released, Samual was diagnosed with croup again but this time we were able to give him treatments at home.

December also happened to be a busy month of baby having in this family as Samual had 3 new baby cousins born in December. All 3 babies were born in different states within the same month so we haven't gotten to meet them all yet but Samual likes babies!

Christmas was wonderful and while Samual had some bumps in the road, he did love all the new toys. We tried our best to find him toys that would teach his purposeful play and I feel that we did fairly well. His occupational therapist is really pushing us to teach him purposeful play which will help him advance his imagination. To be honest I am still confused on all of this but it seems to be helping.

 He loved his play kitchen. We had it all set out for him to find in the morning. He was overjoyed. 

He has had some issues with wrapping paper in the past, we assume its a sensory issue so all his gifts came in bags this year. He loved opening each bag and finding something wonderful. 

A couple weeks ago, Samual had his evaluation for speech therapy. His therapist said he is making great strides in his social skills and has improved most in that skill. His speech itself is still very delayed as well as his language understanding, however his non verbal communication skills have improved a ton! He won't have an evaluation in Occupational therapy until late summer but his therapists agree that he is making improvements. The therapists and I have been discussing the right time to have Samual tested for Autism however I feel that a whole post in itself and I will post it fairly soon.

Samual saw a nutritionist last week to discuss his diet and what things may help him improve as well as getting him to eat a wide variety of foods. We started him on a multivitamin with Omega-3 and DHA and are trying to incorporate more healthy foods into his diet. So far I have been unable to incorporate the flax seed that was highly recommended but I am going to keep trying to find ways to add it in.

I am recommitting to updating this more often so there are less posts this long! For now, I will leave you with some favorite photos from the last few months.

 I just love this shot. 

 Our family Christmas Photo. 

 Samual and his best friend enjoy spaghetti-O's 

Samual and his best friend "O", exchanged Christmas gifts this year. It was quite adorable. 

Samual is two!

     On Friday Samual turned two years old! Man oh man he's growing before our very eyes! On Saturday we had his second birthday party. I tried to keep it as sensory friendly as possible and I think it turned out quite well. Now I'll leave you with some photos for your viewing pleasure.

His first car! This gift was from his Nani, Papi, Uncle Andy and Aunt Mandy and was surely bought just to make me feel older. (kidding..maybe)

The pumpkin painting went a lot better than I had suspected. 

 Every time I turned around he had candy. At least he did alright with it.

He ate with a fork! This is one proud mama!

 The pinata scared him. I didn't expect that at all considering he loved it at home.

All the kids together with their pumpkins. It was an awesome time despite the cold. 

almost 2!

     I cannot even believe it! In less than a week my sensational little guy is going to be two! TWO!!!

     I keep thinking back to when he was first born and all the crazy that went on back then. I think about my pregnancy and how Samual was unlikely to make it at one point, how my body was fighting against him. I can't help but think about how there was a time that I wasn't sure my little baby would be here today. Here we are two year later and my little guy is here and so very very awesome.

     I look at him and cant help but think "its all worth it". He really is the light of my life and despite everything we've been through with his dad, moving away from family, meeting Jd, Samual's diagnosis and just getting through it all together, I know I have the best son ever. My life has truly been better because my life has been blessed with his life. Every meltdown and battle and every bit of craziness that goes on in our home is totally worth it.

     We are throwing him a birthday party the day after his birthday. I have planned out every detail to try to make it easier on him. We are having the party in a park to help with his issues of being around too many people in too small of a space. Being outside will also help Samual be able to walk away if he's too overwhelmed. We are also having games that Samual will enjoy as they use a lot of visual and touch activities. Jd and I are going to get Samual a sweater he has been wanting that is soft and large to help with his clothing issues. We are also getting him large puzzle pieces as per Samual's speech therapists suggestions. We are trying not to overwhelm him with too many new things as he is not one to enjoy a lot of new toys. He's very happy playing with the few things he does have.

     Honestly this whole birthday thing is overwhelming me, trying to make everything perfect for Samual. We are trying very hard to make it all work and still learning all of his sensory triggers and we are not perfect but we are going to give it our all and hope it all works out.

Until next time,

Kisses are the new hugs

     Over the last several months, a number of things have happened. I have changed my way of thinking and the way that I am dealing with all the changes. Samual has adapted more and more as I have made changes to help him cope better with our daily life and I honestly feel that finally understanding him is truly bringing us closer.

     Sometime around three weeks ago I was sitting on the couch watching a movie while Samual sat on the couch next to me. I see him struggling to get off the couch and run into his room. Seconds later Samual jumps on my lap laughing hysterically. He proceeds to climb on me and put his legs over my lap and grabs each side of my cheek and pulls my face into his. At first I thought he'd surely lost his mind as he rarely gets this close to anyone and he was still laughing hysterically. Suddenly he stops laughing and smacks his face into mine and begins to make a humming sound followed by pulling his face away again to laugh some more.

     Honestly, it took me a little longer than it should have to figure out what had possessed my son to do such an out of character thing. After the second time of doing his strange motions I realized he was giving me a kiss. I even began to chuckle a little as my silly boy was grabbing my face and pulling it to his again. As he gets closer, I hum as he does and then let out a rather loud "MUAH!" I seriously thought he was going to fall off of my lap as he threw himself backwards and laughed harder than I'd seen him laugh in ages. We continued this pattern 3 or 4 times more before he got bored and jumped off my lap to play in his room.

     Over the last several weeks hes begun to give kisses often, even kissing the neighbor girl at one point. Which I'm sure you can imagine I was mortified and laughing at the same time. My son the anti-cuddler has learned to kiss and he thinks he's so clever when he does it. Little does he know, it is the best thing ever for his mamma. I finally have a second of closeness with my son and he's initiated it.

Until next time,

Parking it!

     So today, Samual and I decided to go out and have fun. First we dropped off Jd at work and there we learned about kindness. We handed out doughnuts to Walmart associates which Sami loved. I didn't get any pictures but his face was stuck kinda like this the whole time.

     After we learned about kindness, we grabbed some lunch and headed to the playground. We played with the spinning blocks and ran around like maniacs. It was a blast. Samual only hit twice the whole day and both times were at the first playground. We talked it out both times and he got comfortable enough to play without getting angry.

     After playing for a bit we headed to the car to get the stroller and eat our lunch. It was great to spend some time just sitting and enjoying each others company. After we ate, we headed for a walk to learn about nature stuff like feathers, squirrels, trees and nuts.

     The nature walk finished after about 2 miles and we drove to the next park. At the second playground Samual did not have as much fun because the other kids ignored him, much like the first playground as well as the toys at this playground were not suited as well for his age. We started to get a little heated so after the second playground we got some drinks from QuickTrip and stopped at WalMart to cool down and look for shoes.

     About an hour before we had to pick up Jd from work we went to the third and final playground. This playground has always been a fan favorite in our house and Samual had a blast. The kids at this playground played with him and one little boy chased him around growling at him, which of course made Samual a very happy camper.

     The exit from the last playground was less than a happy one but we got through it and Samual was okay in the end, he even fell asleep about 15 minutes later with his hand in the chicken cup :).

Rough

     Bad days happen in this house. In fact they happen fairly often. We have good days too but today I am going to talk about bad days, not because I want to focus on it but because I need to let it out.

     The past two days have been bad days. I mean the kind of days where pulling out my hair isn't even enough. These past two days have been super hard and I can't even begin to say how much I have cried or just sat on the couch staring at the wall for a minute. Its days like this that I pray the most. I cry and I pray.

     Bad days are the days when I ask God why. I ask God why me, why my child? I wonder on these days why in the world did this have to happen to us. Honestly its days like this that I spend moments pitying myself and before you judge me let me finish.

     Having a child with an invisible illness or "special needs" is a journey in self discovery if there ever was one. Its a discovery in figuring out how strong you are and who you truly are in times of rough patches. Times like this can make or break your marriage, they can show you who your true friends are and show you how much your family truly supports you. Times like this can make or break a persons religious beliefs and bring out the best and worst of a person.

     Lately in my prayers I have been sad I guess, wondering what this all means and whats next. I haven't heard a whole lot of answers like what to do but I have heard one phrase over and over again. "I got this." I think sometimes when things are going well we forget that God has got this. He has us in his hands and it's going to be okay. Nothing stays awful forever and life goes on no matter what the circumstances.

     I guess what I am trying to say is bad days happen, they happen a lot. It sucks when they do and because I'm human, I cry and sometimes I scream and sometimes I do nothing at all but I handle them the best I am equipped to handle them. I just pray that tomorrow will be better and I will be more equipped tomorrow to handle tomorrow.

Peace and Love,
<img src="http://img.photobucket.com/albums/v330/Jacque05/jacquie_zps26b415f7.jpg">